On Being Diagnosed with Breast Cancer

Posted onDecember 21, 2009byCaitlin C.

by Claire Mayne

Two years ago, at the age of 37, I was diagnosed with breast cancer. The 2.7 cm by 0.9 cm lump in my left breast was found to be malignant. I never thought of it as a “lump.” That might have triggered alarm bells earlier. It was just part of my breast, a hard “bit” that had been sitting there comfortably for years in the center of my breast since breastfeeding, not getting bigger, not getting smaller. It was a part of me. Scarily enough, not once did it occur to me to have it checked, not until my husband insisted. The earnest look on the face of the woman who performed my ultrasound made me realize I was in trouble. So much for breast cancer awareness.

The days between diagnosis (invasive ductal carcinoma) and treatment were the worst. Sitting behind the computer late at night, I couldn’t stop myself reading the horror stories on the Internet: patients going into surgery with stage II breast cancer and coming out with stage IV. I looked up what metastasized breast cancer felt like; I had, after all, been complaining about my shoulder lately.

At night the fear was greater, of course. I was horribly deceived by my body. Up until a week before I’d felt fine; now I was a young mother of two with breast cancer. There was no reason not to assume the worst possible outcome, not in the middle of the night. I heard a lot of stories, friends of friends, who were doing great after having been treated for breast cancer. Breast cancer is very treatable, I kept hearing: “You caught it early.” This was not reassuring. The more stories I heard with a happy ending, the more I was convinced I was going to be the exception. And let’s be honest—with more than 40,000 women dying every year of breast cancer in the States alone and more than half a million worldwide, it was a possibility. A woman dies of breast cancer every 13 minutes. Remind me again—what is there to feel positive about?

Soon I stopped reading and listening too much. There is only so much you can take in, and I got tired of trying to figure out how reliable the sources were. I went for a second opinion, and the doctors seemed to know what they were doing, so I surrendered completely to their guidance. What they suggested seemed to be the standard treatment for my kind of cancer at my age. And realistically, how much choice did I really have? I could have insisted on having a mastectomy instead of a lumpectomy. I could have refused to undergo chemotherapy against the advice of my doctor, but what alternatives are there to chemotherapy, other than simply refusing treatment? Did I want the burden of that choice? Not really. Therefore, there was no question I would go against the suggested treatment plan of chemotherapy and radiation, better safe than sorry, even knowing that chemotherapy is a brutal treatment with uncertain success. In my case, chemotherapy was given as a preventive measure after surgery, so I will never know if it helped. I will eventually know if it didn’t.

I convinced myself it was a matter of getting through the treatment. Of course, it helped that I found out that the cancer had not spread to my lymph nodes. This was not a question of willing myself to get better. The cancer had been removed. This was survival mode: do not question what you are doing, and do not consider what to do if it does not work. All I had to do now was concentrate on the side effects of the treatment and the side effects of the medication for the side effects of the treatment.

In many ways, for me, going through chemotherapy was like going through pregnancy but without the anticipation at the end. I was not a great fan of pregnancy either. In both cases my body felt like it had been taken over. I gained an uncomfortable amount of weight—who said chemo causes weight loss? My skin turned pasty, I developed strange cravings for blue cheese and chocolate croissants, I hardly made it up my hill from exhaustion, and my mind was foggy on a general basis. And all this was caused by the treatment, not the disease.

Nevertheless I underwent the program diligently, blogging along the way, adding my story of nausea, exhaustion, and baldness to the World Wide Web. There are many stories out there like mine. Sometimes I used the cancer card to get out of an appointment I did not feel up for. Routinely, I used it as the subject of my humor.

There were some things I didn’t find funny. During the usual three-hour wait in the doctor’s waiting room, I would silently work myself up about the handcrafted quilts hanging on the walls, with the words “love, hope, and courage” stitched across them in pastel colors. I never felt undergoing chemotherapy had anything to do with courage. I didn’t feel brave. I had no choice. You want to stay alive? This is the best all our advanced medicine has to offer, even though the treatment hasn’t significantly changed in 20 years. The medications against the side effects have improved dramatically, but the basic treatment is still the same. I don’t know where the terminology “warrior” came from in relation to undergoing treatment for breast cancer. One definition defines a warrior as “a person who shows or has shown great vigor, courage, or aggressiveness,” a title that certainly did not apply to me. If anything, I felt like a foot soldier, following my orders to march.

Walking through Bloomingdale’s in October, the pink section propelled my nausea to a whole new level. There’s nothing pink and rosy and cheery and “princesslike” about breast cancer. In her new book “Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America,” social commentator Barbara Ehrenreich rightfully questions the upbeat, “feel good (pink) aura” that surrounds the breast cancer culture and the women that have this disease. Why is it that cancer cells should suddenly transform grown women into bear-hugging little girls?

“Possibly,” Ehrenreich suggests, “the idea was that regression to a state of childlike dependency puts one in the best frame of mind for enduring the prolonged and toxic treatments.”

During my treatment I did not ask too many questions. I did not ask why I was the one that had developed breast cancer and not others. I only briefly considered where it came from. Too many questions would not have served the goal of getting through the treatment.

Many women who have had breast cancer say they have become a better person, that breast cancer has made them focus on their life, eliminating the bad and concentrating on the good. Some say they are thankful for the cancer, as it served this purpose. I am not one of those people.

Going through treatment, I realized full well what I had and what I didn’t want to lose, but I can’t say I became a better person because of it. Aside from my newly found tendencies to hypochondria, a short haircut, and an even shorter temper, thanks to my chemically induced menopause, I have not changed as a result of my treatment.

The appreciation of life soon fades into the background as life picks up again and gets replaced with the immediacy of considering what to put in my son’s lunch box. Life has returned to a sort of normal, but not necessarily a better normal. The bottom line is, cancer sucks and so do the side effects of the treatment for it. The road to end this epidemic is a long one. I’m not sure we are progressing effectively or quickly enough towards that end, though.

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There’s nothing pink and rosy and cheery and “princess-like” about breast cancer.

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Ultimately, I got through the treatments relatively smoothly. I was never burdened by expectations other than the expectation that the treatment would come to an end, which was made easier by my prognosis and a great network of friends and family. Eventually I hope to be able write it off as a once-in-a lifetime experience. Eventually I hope to get back my clarity of mind and live a life free of hot flashes, which occur with annoying frequency.

Barbara Ehrenreich wonders why there is not more anger among cancer patients. In her book she points out that it was anger and protest that moved the medical world from radical mastectomies to a more modified breast-saving surgery. It was anger and protest that stopped the practice of surgeons performing a mastectomy as soon as a biopsy turned up positive, while the woman was still anesthetized and unable to make a decision of her own. Anger can be beneficial to change. Anger should not always be suppressed in favor of managing the status quo.

However, other than my problem with the pink, I was not angry during my treatment. I was a compliant patient, maybe too much so. But as I write this piece 1.5 years after my treatment ended, more frustration is bubbling up than I expected. The thought of ever having to go through similar treatment again makes me feel nauseous, as the smell of the soap in the hospital still does. I am tolerating the side effects of the Zoladex shots and aromatase inhibitors that I am taking to prevent a recurrence, with the idea they are always better than a new cancer. I try to live a healthy life. I eat organically mostly, I don’t drink too much, I do yoga, with now and then a splurge on the bad side for sanity’s sake, but I have no idea if my lifestyle now will prevent a cancer returning. There is so little known about what causes breast cancer, and every week a new article seems to be published with another possible contributor. This week it may be the fire retardant chemicals coating the couch I am sitting on to write this piece. Should I get rid of the couch on the basis of these possible findings? But maybe the cause of my cancer lies in the food I ate when I was a child, or maybe it was the air quality of the places I grew up in. I don’t know.

There is one thing I do know. I will not be able to do it all again. I couldn’t take on the questions of what causes breast cancer or question the treatment I was being prescribed. I just needed encouragement and support to get through the mind-numbing treatment. Now, though, it’s a different issue. Now I am ready to ask questions and demand answers. And I owe to all those other women who will have to endure what I endured. Because if there is one thing I know for certain, there will be other women. And at some point this madness called the breast cancer epidemic has to end. But it won’t end on its own, and it won’t end unless we do something about it.